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Thursday, January 12, 2017

Progress & Visits

Sorry I haven't updated for awhile. Things have gone pretty smoothly, though there is still no confirmation that the new bone grafts have "taken." We met with Dr. Matthews and Dr. Franks on Tuesday. The infection is under control, though the abscess continues to drain some each day. They will take CT scans towards the end of January to see how the bone is doing. The infectious disease Dr. is treating it as if it's osteomyelitis, though all 3 doctors think we caught it early enough that it didn't go further than the soft tissues. Thus, the PICC line, which we are managing quite well here at "home." The antibiotics make KT very tired, but she is not in much pain at all - in fact, less pain than the last six years! That is what's so amazing.

Her face definitely looks different, and the two rib grafts are apparent as the swelling goes down. Having her mouth wired shut with her big tongue stuffed into the back of her mouth is putting pressure on the front teeth, so they'll need to be readjusted when this is all over. She figured out how to drink tomato soup last night with a straw by stuffing the end of it way back into one side of her mouth! She's also used baby food squeeze packs to get a little bit of taste in her mouth. All other nutrition is provided by the g-tube.

Robin Kargoll's daughter Faith has Goldenhar Syndrome,with lack of facial bone similar to KT's. There is a TLCspecial on this syndrome called, "A Face Like Mine"if you want to look it up. We enjoyed Robin's visit!

We've had some very lovely visits: one from Anita Aldrich Birley, a gal from our Virignia Ward who now lives down here near Charlotte, and one from Robin Kargoll, the Mom to a young girl with a facial syndrome closely related to Katie's Treacher Collins Syndrome (TCS). Her daughter, Faith, has undergone the same types of surgeries KT has had to endure. We've been in touch by phone and over the internet before, but this is the first time we've met in person. Lovely people! Today we expect another visit from Judy Mosher, who organizes worldwide retreats for families with TCS.

Yesterday we had another very great blessing, in that we were finally able to resolve the insurance issue for KT. Because she turns 21 next week, her military health insurance coverage changes. So we've been worried about which of 3 options to pursue to keep her insured. The best alternative hasn't worked out yet (it still may, down the road), but the 2nd best option came through, which was much less expensive than the 3rd option! So we're happy about that!

KT wanted to get out of the house yesterday, so while Pam napped, I took her to the Discovery Center in downtown Charlotte. We had a nice time, and it got her moving pretty good. I leave tomorrow to go back to work, while Pam and KT will stay here for up to another month.

Thanks for your prayers. Please continue to implore the Lord that these new bones in her face will heal correctly, be infection-free, and be mechanically effective as a jaw joint, as that is the entire purpose of this.

About Me

Katie was born with Treacher Collins Syndrome, and has been trached since a newborn. The 2004 & 2011 surgeries were intended to help open her airway, align her teeth, and allow her to eat more easily. However, due to what we consider to have been woefully inadequate preanalysis and planning, those surgeries were complete failures and left KT with severe facial pain. Now, we are trying to find a solution to eliminate pain primarily, and to create a jaw joint that will allow her to chew food, which has become more and more difficult as she's entered adulthood.